Kimberly Woudenberg – Knowing What it Takes

“Walking
into a chemotherapy room is not an easy thing to do, even if you know that it
is the best thing for you.”

I was diagnosed with PNH in 2009 at the age of
twenty-two. In my eyes, I was invincible. I could even count how many times I
had gotten sick throughout my life on one hand. So accepting the diagnosis was
not easy. I was six months pregnant and pushed all of my worries and fears
about my disease onto how it would affect my son. After months of constant
anxiety and blood transfusions, my son was born perfectly healthy. With his
birth however, I had to face how this disease affected me. I started eculizumab
(Soliris®) and my blood counts stabilized, but remained extremely low.

I hated going to the doctor’s office every two
weeks and I loathed having to walk into the chemotherapy room. I always picked
a chair that was the farthest away from everyone and I would sit and watch. As
the months went on, I started to realize I was seeing people at their lowest
moments, looking frail and weak. I did not see myself that way and more
importantly, I didn’t want others to see me like that.

After
weeks of watching everyone in the chemotherapy room and hearing some of their
stories, I realized how wrong I was. They were not the weak and frail beings
that I originally saw, but instead were warriors in the depths of a personal battle.
These people are among the strongest on earth and I was getting the chance to
prove that I could stand with them. Having a disease like PNH does not make me
a weak and frail person -- my attitude toward my disease dictates if I am a
warrior or not.

I
began to read everything I could about my diseases and attended every
conference that I could. I chose to live every day with a positive outlook. It
was in this frame of mind that I got the news that it was time for a stem cell transplant.
I was required to meet with a psychologist as part of getting
ready for the transplant. It was in my meetings with her that it really hit me
how important your mental outlook is to the success of treatment. I have an amazing sister who matched me as closely as possible and
because my counts remained so low, in November of 2011, I received the transplant.
My warrior attitude and the amazing support of my family got me through weeks
in the hospital and months of recovery.

Like
everyone, I had my good days and bad and sometimes it seemed overwhelming, but
I tried every day to focus on the good. It has been almost two and a half years
since my transplant and I am doing very well. The road was never easy, but the
one thing I learned from all this was that having a positive attitude is
everything. Not only when you are facing huge trials like having a bone marrow
failure disease but with everything that comes on a daily basis. Having a
disease doesn't make you a weak person -- your attitude toward your situation
determines if you are weak or if you are a warrior.

Originally published on Thu, 12/11/2014 - 10:58am. Last updated on Mon, 05/18/2015 - 2:57pm.

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